Building Our Village - Early Intervention & Access to Resources
We are blessed. The number of people in our life that want to help us is WHY we are still afloat, both as a family of 6, as well as a special needs family. Little extra background information, our family is a blended family. My oldest two boys are my step-sons, and they have been a part of my life for the past twelve years! Then six years ago, we had Jake and finally Benny three years ago, to round out our family of six! Four boys, which makes me extremely outnumbered. 🙂 Besides the point! Prior to having Benny, we have always had an amazing family and the best friends. Now, since Benny’s diagnosis, we have found that our village just continues to grow around us, and for that we are eternally grateful.
Life is a journey for everyone. For Benny and so many others with AS or other differences, their journeys have many EXTRA components to be added along the way. This in turn means their families have a LOT more to be added to their plate, on top of the typical family things. To understand and balance it all can be A LOT! My hope with this post is to bring awareness to some pretty great resources that are out there to HELP Special Needs families balance and keep afloat with all of the moving pieces. As a mom, I question myself a million times a day, “ how I can better help my son/kids?” I am kept awake at night wondering if I have done enough for him. I know parents out there everywhere ask themselves the same things, and for a variety of reasons. If this can help anyone you know, please share it!
When Benny was about 6 months old, it was becoming very clear to us that he was not meeting milestones in multiple areas. Thankfully, his pediatrician heard me out, saw what I was telling her, and jumped in to help and support him right away. This is not always the case for families. Sometimes families have to plead their case, and wait many more months before someone finds more ways to help their child with them. If you feel something in your gut, follow it and fight for it, that feeling is there for a reason.
Shortly after his six month well-check, the paperwork was filled out for him to be evaluated by our county Birth to 3 Early Intervention program. He was evaluated for Physical Therapy (PT), Occupational Therapy (OT), and Speech. Low and behold, he had extreme deficits in all three areas, which qualified him for services right away. In a future blog post, I will plan to highlight all of these therapies. My hope in this post, is to share and remind people that this resource is out there in most states, and to get it into place as soon as you can.
Early intervention when your child is experiencing deficits is EXTREMELY important. I say this with confidence working as an Elementary Educator, and as a mom. I’m also not going to sugarcoat it, It will add quite a bit to your child’s day and your family’s life, but in the long run, it is beyond worth it. Our Birth to 3 therapists and case manager became part of our family for over 2+ years, and we are forever grateful for their love and support for Benny. Even without a diagnosis they could jump in and help because their goal is always to meet the child where they are not, and no label changes the care that they give, it just provides them with more information. These therapists came to our house 3-4 days/week between the three of them. They provided us with some great exercises and routines to get Benny started on while we continued our journey of finding out what Benny’s diagnosis would be.
Medicaid and the CLTS (Children’s Long Term Support) County waiver were the next helpful pieces of our puzzle that we got rolling extremely early, thanks to my amazing colleague and friend. She expressed the importance of getting on the Medicaid and CLTS waiting lists immediately, even without knowing Benny’s full situation/diagnosis yet. I have her to thank for helping me to know how to do this. Everything in the Special Needs World takes forever. If you think you’re going to need it, you need to start asking for it a year in advance. Yes you read that right, a YEAR in advance! When doctors ask me if we have either Medicaid or CLTS, and I answer yes, they still are extremely surprised with how young Benny is. I cannot thank my friend enough for helping me to get started on this for my son right away! SO, I am passing on the tips that I was given!! It takes a village, I could never do this alone. I have been blessed with these people along the way to help me navigate!
How did Medicaid help us? Well, it steps in pretty much whenever our primary insurance does not, which is VERY OFTEN!! (insurance battles could be its own blog, or even its own website!!!) Here are some detailed information about Medicaid in case it can help anyone! Medicaid is health insurance that provides health care coverage for children who qualify (have complex medical needs, have a long term disability, have mental health needs, or live in the community instead of in a hospital or institution In our state of Wisconsin, Katie Beckett Medicaid was signed into law in 1981, and since then over 500,000 children have been served in 24 states where it was put into place. How do you find out if your child is eligible? In Wisconsin they must be:
Under 19 years old
Have a disability
Be a WI resident
Be a US citizen or qualifying imigrant
Live at home, in a foster home, or in another eligible community-based setting
Meet the requirement based on a functional screen
Not have more than $2,000 in income a month that is in the child’s name. (includes Social security benefits, child support payments, trust payments)
If you are interested in applying in WI, call the Katie Beckett line 888-786-3246 and an eligibility specialist will assist you. If your child is deemed eligible, you will receive a Forward Health ID card to get Medicaid-covered services.
The CLTS waiver is another support for families to help get resources, equipment, services passes, therapies and more that your child needs. They can’t get you everything, but my motto is “all you can do is ask.” If they can, and you asked, then they will. The CLTS program is also where we found out about Respite care. Currently we get 25 hours of respite care covered a month. This is an AMAZING support! We have a few Respite caregivers that have been so wonderful with Benny and for us, but it continues to be an area we look to grow. Respite is helpful so that my husband and I can continue to support our other kids, get time together, or just accomplish a few things here and there while knowing Benny is having all his needs met by another caregiver outside of us. My middle step-son even started doing this at the age of 13! Again, if this is something you or a friend didn’t know about, pass along the information!
As I wrap up today’s blog about resources, my main goal and reason for this post is to help others get rolling in the support that is out there as soon as you can. The last thing that I want to share with you is a state resource list found on the Angelman Foundation's Website. It has some extremely helpful links for people across the country. State Resources from the ASF Website. Thank you for following along, and if you have any questions, comments, or just want to send a message, feel free to send us an email: believinginbenny1@gmail.com
